Siezures

She had 3 yesterday and the higher dose of meds should be kicking in. I think if she has any today we will know we need to do something else. Of course that problem is that my husband is being pissy today because he lost his comb (yes, you read that right.) which is somehow my fault, so I am sure he will not be diligent in watching her and will forget to tell school to watch. :hissy: :hissy:

I'm not too familiar with dealing with seizures so this is all new to me too. Our fs who just turned 2 has had two, and I am clueless. The only thing I do know is that they have been triggered by him holding his breath. The first was back in dec. he had a bad coughing spell and couldn't catch his breath. By the time I got him out of the crib(luckily i was listening closely) he was turning blue around his lips, his hands were drawing up, his eyes were rolled into the back of his head and he was shing only a little bit. Afterwards when he was breathing again and stable he was VERY pale, lathargic and fussy/whiney/clingy like never before for atleast an hour and then he worked his way back to normal. The sacond time my husband was playing with him and he was laughing like crazy then he went straight from laughing to crying without a breath in between. He started turning blue again and his fists were drawing up, eyes rolled back and about the same afterwards, pale, lethargic clingy and fussy. EEG came out normal and we go to the nuerologist at the end of oct. We do have meds to use on him if he goes into another one. It is very scary when you are not familiar with it. You feel helpless, like they are going to have brain damage from lack of oxygen and there is nothing you can do about it. hope things get better for you.

Can you maybe ask about trying Clobozam? We have had wonderful success with it with our AS who has tonic-clonic (Grand Mal) seizures. He has idiopathic epilepsy (no explanation - his MRI was normal) with nocturnal seizures, and we have been playing with dosages for the past year. He is now almost 6 months seizure-free with a 10mg dose of Apo-clobozam daily. The neuro was hoping that he would outgrow it as well, but whenever we drop below 10mg, the seizures start again, so it will likely be lifelong for him. She told us that puberty will make/break it. He could either outgrow them completely or they could get much worse. BUT, "lucky" for us, nocturnal seizures will rarely manifest into daytime seizure activity -- something to do with brain activity in his sleep. When we were looking into the possibility of petit mal seizures with him (zoning out during access visits and other stressful activities), the research I did said that they will usually just space for 5-30 seconds and then just "come back". I don't recall there being a recovery period for petit mal seizures. I will suggest though - get a medic alert bracelet for her. She may seize at such a moment that she could really put herself in danger --- on a swing, on her bike, etc. It would be good for someone there to know what happened if she can't tell them herself. Best $80 and $40/year I've ever spent. Usually you can get them for free if you go through the child's school. GL! It can be sooooo scary when you don't know what's going on with your child. M had had a few febrile seizures when he was very little, but nothing major manifested until last summer, and he had a G/M seizure lasting over 7 minutes! The good mom I am, I didn't panic until after we got home from the ER! Then I thought I was going to be sick!! ;)

She has been seizure free all day today. Hopefully we have found the magic number. We are waiting for an EEG to be scheduled. They have always been normal so I am not sure how much help that will be but maybe is will catch the zoning out kind.Its hard to find a med for her because she is so small (40 pounds) and she already has liver issues. Those two things rule out most good meds.No medic alert bracelet necessary. This is not some kid who is going to surprise people with her disabilities. They are pretty dang obvious!Thank you all for the support. This is the first time in a long time I have been worried about her making it to the morning. It helps to get on here and see all the replies!

Do they just "happen" or are there triggers, like stress, smells, lack of sleep, etc? An EEG will only show the activity it records, it won't show you something that happened 20 minutes ago, or what will happen in 1/2 hour, y'know? Ours were always normal, too, until we did a sleep-deprived EEG which went crazy.

I have petit mal seizures although my last one was 15 years ago. I take a muscle relaxant for it (neurologist prescribes it). I fall; things fall out of my hands. Never go the whole night without sleeping. Also try and see if your child is anxious about anything. PM me if you need more info.

Seizure free yesterday. If there are none today I might be able to exhale!

So glad to hear it Jen!!:) Here's hoping she continues to be seizure free!!Btw...did dh find his comb? Or did you find it and promptly shove it in his ear?;)

Little Guy has siezures--blank stare, localized jerking and full body.....we also suspect psycho-motor seizures (but since that can look like stereotyical behaviors, its hard to convince medical staff). He is on a maintenance drug and has the diastat. Initially the seizures were fever related, but then progressed. At one point while on one seizure medication he was having multiple blank stare and localized jerking many times a day and for just about any cause. The thing is, even though he is very obviously autistic, if I could get him to wear an alert bracelet or necklace I would.

Crick. Comb was discovered in exchange student's room. I blamed little DS. He said he does not have a good enough memory to remember things like that (which I was well aware of when I chose him to blame it on). I promptly re-hid the comb because I don't appreciate being yelled on my way to work. Training husbands is seriously hard work!Lady, I am pretty sure she would eat the bracelet. The last time we tried to adjust seizure meds she got toxic and what they kept calling siezures was actually the toxic reaction. It looked like what you are describing. That's what I am hoping to avoid this time around!

All 4 of mine have seizure disorders of one kind or another. Lyla and Bremon are med free now, but Nate and Abbie both take combinations of different meds. Nate takes Topamax, Gabitril, Keppra and Klonopin. He has 2 types of seizures infantile spasms and Atonic. Abbie takes Keppra and Klonopin, she just has Infantile Spasms. The thing with seizure meds is, that after a while they have to be adjusted, for various reasons. The main one being that after awhile their bodies become immune to the dosage. Before I got my kids, seizures would totally scare me. But now, it's a normal thing. The best way that I can explain how it feels..and this was told to me is...it's like being on a 2 week drunk, with a major hangover. Hope you find the right combo for your lil one soon.

I think we maybe have the right dose now. We will see. The last few times we up-ed it, it took about a week to kick in and then stopped working afer one good week. Its not the seizures that scare me. Its what they might signifiy. You all will love this! we take her for an EEG today. She has to be sedated because she rocks her head constantly and won't let people mess with her hair. We take her beyond tired and they still can't get her sedated. So they send us home with a giant perscription for a sedative (I thought it was klonapin but that might not be right). They tell us give her a half a tablet every half hour until she passes out but no more than 4 pills. After we figure out how much it takes, do it three more times to make sure that is the right dosage and then bring her in and they will give her that dose and try the EEG again. Something about this strikes me as bass ackwards. But I trust the doc with my life (she is one of two I have met that I think might be smarter than me) so I am willing to try it. I just wish they would have given me enough that I could test it out on my healthy 4 year old at the same time. Imagine the sleep I would get!

So we never really got the seizures stopped. She is having about 4 a day but they are quick (like she throws her arm back and zones for 15 seconds afterwards and then goes back to what she was going). I basically demanded that they do a CT and the doctor told me she would but that this was normal. DD had a massive brain bleed (basically blew out her entire frontal lobes) a couple of years ago and doc said its pretty standard for seizures to start once all the scabbing from that has scarred over. Just thought I would share because I knw we have a couple of brain injury folks on the board. We have been tweaking her meds and she is actually doing much better than before. I didn't realize how zoned out we had gotten her on seizure meds. We are replacing trilepital with a new one (can't remember the name but it is known for causing allergic skin reactions) slowly. Every week as we back off the trilepital I can see her coming back to life. I think she is actually talking more than before the siezures started. Used to be I could go a few days without hearing her talk at all. Now she is back to leaving fractured unintelligible phone messages for grandma at 7 at night.

How cool to see her coming back a bit!!! Leaving messages for Grandma...snort! LOL! You coach her to tell Grandma that Mommy is only drinking ONCE a day, not FIVE?;)Seriously...cool to read...I love good news stuff!

She told her happy birthday and "I love Pop." She was talking to my mom (whose birthday is in January) and Pop is my hubby's dad. Luckily she is unclear enough that my mom could "hear" something that sounded like it was meant for her! (Actually, she hears what she wants even when I speak perfectly clear!)